At the age of 12, life as I knew it was dramatically interrupted—in the midst of junior high politics and the fall softball season, I was diagnosed with Stage 4 ovarian cancer. After weeks of feeling vaguely crummy, my family physician suspected something serious and referred my family to University of Iowa Children’s Hospital. The ensuing days were frantic—round-the-clock diagnostic tests; surgery to remove a football-sized tumor from my abdomen; delivery of the extremely grim diagnosis; and horrible nausea from my first round of chemo, including Cisplatin.
Fortunately, the experimental chemo protocol, while toxic and full of side-effects, hit my cancer head-on. Within a year, I was in full remission and have gone on to live the following 28 years cancer-free.
For the first ten years after treatment, my role as a survivor was relatively easy—I was followed so closely by pediatric oncologists at UI Children’s Hospital that any health questions that popped up were addressed immediately by the same team that oversaw my active treatment.
It was not until I graduated from college and moved to Kansas City that things became a bit more complicated. By then, I had been released by UI Children’s Hospital as a “cancer patient” and was encouraged to seek medical care on a well-person basis. During a doctor’s visit for a routine virus, a heart murmur was detected and I was referred to a cardiologist. Upon seeing my answers to the medical history form, the physicians barraged me with questions about treatment I had received ten years earlier. “What drugs? What dosages?” A pediatric cancer patient doesn’t know those things, our parents do. And because I had been under the umbrella of the pediatric oncologists at the hospital where I originally received treatment, they always had fast access to my medical records.
I quickly became versed in my own treatment history by going back through notes my mom had taken ten years earlier. Every time I sought medical care (and even dental care), I had to rehash the same exhausting history. I began to distinguish between when a care provider had a valid reason for those details and when they were curious about my story—a 12-year old diagnosed with ovarian cancer carries some shock value.
I also learned to navigate making some strange self-referrals to, for example, an audiologist. I knew Cisplatin damaged hearing but didn’t know if the damage continued beyond treatment. Some new situations with my hearing dug up that concern, and I navigated a situation that was a first for me—asserting why I needed testing that was extraordinary for a 30-year-old.
When my husband and I wanted to start a family, a whole new host of really difficult issues was raised. One ovary was removed with my tumor. Did treatment damage the other ovary? Appropriately, no one in my family nor on the medical care team spent any time worrying about that in the midst of treatment. Their focus was on my survival, rather than what may happen twenty years down the road. Fortunately, we had by that time moved to Iowa City permanently and I sought care from the world-class infertility program at UI Hospitals and Clinics. Our smart and sassy 7- and 5-year old daughters are a testament to that success.
Throughout this whole story, it has become apparent that navigating care related to side effects and long-term effects of my treatment has been the biggest challenge for me of being a cancer survivor.
That changed about four years ago when University of Iowa Hospitals and Clinics began an adult clinic for long-term survivors of childhood cancer. My care coordinator, Patty Schwickerath, took a deep dive into my medical records and determined which treatments caused the need for monitoring of possible long-term effects. Patty brings a comprehensive perspective to managing my long-term health, with a specific plan for annual follow-up items. In addition, she advises me on a plan of action if any health problems arise in the meantime. It is a relief to not have to explain my health history each time I need to seek care for an acute condition—she already knows my history!
My wish for all long-term survivors of pediatric cancer is that they can find advocacy and care coordination for the nuances of their health situation. I feel very fortunate that, after a Stage 4 diagnosis, this is my biggest survivorship issue!
Sheila Baldwin
